This morning an overnighted packet arrived from the Myeloma Institute in Arkansas. I have a (tentative) appointment for a week-long re-evaluation that starts on Monday at 8AM, but I am starting to think I'll be reducing that to a one-day consultation instead. The reason: mainly insurance, since Aetna (I've been told just this morning) will not pay for a complete re-evaluation again.
I also found out from my Aetna transplant coordinator that if I'm going to get an allo-geneic I'll have to do it as part of the trial with MD Anderson. I still have time, of course, when it comes to re-thinking the allo because the research nurse at MDA said I had 120 days to start the allo (of which 30 days has already passed.)
On May 7th, I'll be going in for my monthly post-transplant evaluation at MDA, so it is then that I'll have to begin openly voicing my concerns and problems with getting an allo out-of-town at MDA. And, even if I refuse the allo, I know they will then want me to do a 2nd auto. I do not, of course, HAVE to do either. This IS a trial, after all. Not standard treatment. I have already done what many people do to bring the MM under control. And, as far as I can see, it is under control, if not completely eradicated.
The nurse and schedule person at Arkansas is going to get back with me soon. I'll know more as the day progresses.
God bless this mess.
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